Dear Reader, I want to invite you to join me and 700 others from the rare disease community at our annual Summit. This year, NORD’s 2018 Rare Diseases and Orphan Products Breakthrough Summit will take place October 15-16 in Washington, D.C. We expect this year’s Summit to again be the single most important gathering of Read more >
Washington, D.C., August 6, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding the recent passing of Dr. Robert M. Campbell. “NORD is deeply saddened to learn of the passing of Dr. Robert M. Campbell. A great Read more >
Do you want to learn more about how genetic testing can be helpful in the diagnosis and management of rare diseases? We will cover these topics and more in a free webinar on August 22 at 3:00 p.m. EDT. Join us as Debra Regier, MD, Director of Genetic and Genomic Education at Children’s National Hospital in Read more >
The 2nd Annual Perthes Family Conference is scheduled to take place on Saturday, October 20th, 2018 at the Texas Scottish Rite Hospital for Children in Dallas, Texas. This full day event will be complete with topics that matter most to Parents and Families as they navigate their children and families through the Perthes life cycle
The LAM Foundation and the NCATS/NIH Rare Lung Diseases Consortium hope you will join us to advance rare lung disease research at the 2018 International Rare Lung Diseases Research Conference, to be held in Cincinnati, Ohio, on September 6-9, 2018.
Join FARA for the 7th Annual rideATAXIA. rideATAXIA Chicago will offer fully supported 1, 4, 12, 27 and 50-mile cycling routes on scenic country roads plus delicious post-ride food! rideATAXIA benefits FARA- a 501(c)(3), nonprofit organization dedicated to research leading to treatments and a cure for Friedreich’s ataxia (FA).
The Ehlers-Danlos Society will be holding the International Symposium from September 26-29, 2018 in Ghent, Belgium. Clinicians and researchers are encouraged to attend the meeting to discuss the molecular, pathogenic, clinical, and management aspects of all types of Ehlers-Danlos syndromes.
Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking the organization’s 35 years of Read more >
Join the Dup15q Alliance and the Angelman Syndrome Research Foundation from August 6-7 for world-class scientific, translational and clinical presentations. This symposium allows for the sharing of unpublished work, which leads to conceptual discussions and helps to accelerate therapeutic opportunities for both disorders.
The First International Symposium on PSP & CBD will take place in London from Oct. 25-26, 2018, in conjunction with CurePSP and the PSP Association. The latest research updates will be shared through scientific and clinical presentations and poster sessions. View a draft agenda and register now.
CLOVES Awareness day is one day a year – around the world – that the Cloves Syndrome Community collectively organizes and shares information about CLOVES Syndrome. Raising and spreading awareness leads to increased interest, compassion and care for rare diseases like CLOVES Syndrome. With increased awareness and an engaged and active patient population, there will Read more >
A representative will be in touch with you shortly about your inquiry. [Return to NORD Summit Overview]
Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. The blog post below was written in November 2015, sharing the story of the Yankanich family who has been raising money for Pheochromocytoma research with NORD. Read more >
Watch the latest release from NORD’s RareEDU™ on gene therapy.
Washington, D.C., July 17, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement after responding to the Administration’s “HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”: “Yesterday, NORD officially responded to the Trump Administration’s call for commentson their ‘Blueprint to Lower Drug Read more >
Dr. Scott Gottlieb was sworn in as the 23rd Commissioner of Food and Drug Administration in 2017, and provided a keynote speech at the NORD Rare Summit shortly thereafter. 2018 marks his second year at the Summit, and we look forward to Dr. Gottlieb’s update for the rare disease community. In addition to Dr. Gottlieb’s Read more >
The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure started the day Joshua Frase was born with a disease so rare that he was said to be only one of fifty five known cases Read more >